A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
MaxineR
Posts: 7
Joined: Wed Aug 23, 2017 6:26 pm

Re: Thanks for sharing your experiences . . .

Postby MaxineR » Wed Sep 06, 2017 7:59 am

Hello Mo, I hope all is well with you. I have just finished reading your epic thread and have found it truly inspirational in this period of uncertainty/certainty that we are facing.
May your humour and positive energy continue to blast through the gloomy clouds that cluster from time to time over our Planet PC.
Best wishes to you, Peter and Boris x

Justamo
Posts: 364
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Wed Sep 06, 2017 4:58 pm

Maxine, you deserve a medal for endurance/perseverance !

Thanks for the good wishes to Peter and Boo. One has just eaten his supper and the other one is crawling into his sleeping bag for a power nap.

Love, Mo

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Wed Sep 06, 2017 5:07 pm

And what about the all important Justamo? Hope you are taking it easy?

What did Boris have for his supper? Oh and tell Peter if he needs a nap to use the bed :) :) :)

Lots of love as usual xxx

Justamo
Posts: 364
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Wed Sep 06, 2017 10:11 pm

Thanks for that PW - message passed on . . . .

I'm OK-ish, really. Got a swim on Monday, and then as Peter was having a 'quiet' day I went to an energetic aquarobics class at our leisure centre in the evening. I only do what I can, and when the rest of the class is twisting and jumping I run on the spot instead. Unfortunately, I was rather distracted on Monday, because a totally delicious looking man was swimming up and down in the lane next to me so I paid scant attention to the class. I only caught the last ten minutes of his training though, and his place was taken by a very earnest looking female who was such a powerful swimmer that she scared me.

Strangely, things have been a lot more relaxed at home since Peter grasped that he does have a terminal illness. On Monday his appetite failed him, and rather than force food down he just pushed his plate away when he'd had enough. He rallied when I produced ice cream and fruit, though, and ate a good helping of that. His continual hiccups seem to be made worse by onion and peppers, and as my repertoire includes onion, garlic and peppers in nearly everything except rice pudding I'm kind of stumped for what to cook. He would cheerfully eat chicken for almost every meal, and he loves fish as well; one of last week's successes was smoked haddock cooked in milk (yuk - just like school dinners) and served with rice. I'll see what Delia has to offer in the way of nourishing non-Mediterranean non-meat meals and try a few new things.

I have put myself on a very strict diet. In my efforts to get Peter to regain the 3st he lost I filled up all the biscuit tins and sweet bowls and I'm only human . . . I'm a stone-and-a-half overweight, and nothing fits me. Having organised a girls' lunch for early October where the dress code is definitely not jeans and a loose shirt, I am struggling to get anything to button or zip up, and I refuse to buy 'fat' clothes. And I've got Joan's Memorial Service in London at the end of October too, and my good suit just won't go near me. It's not that I'm hungry; it's just that eating seems to be my default mode at the moment and I don't understand it. I've never been greedy or an over-eater, but I seem to be shovelling food down without thinking. So since Monday I've been Very Good. And not hungry, but then hunger never was the source of the problem really. 'Stress eating' sounds a bit like an excuse, but it's the only thing I can put it down to.

Boris is stress-eating too, but then he always has, especially if there are Dreamies in his treat tin. He went to the Vet for his annual injections and MOT last month, and she suggested that he have some special sweets to help clear the plaque from his teeth. As it costs the best part of £300 to have a cat's tooth removed, to say nothing of the heartbreak of watching your poor boy go off to be tortured, I bought the tooth-cleaning-sweets and Boo is only to anxious to co-operate. He got a gold star and a tick for being svelte and beautiful last month at the Vet's, but if he carries on like this he'll ruin his figure.

I think that's enough about me for the moment. My Patient has been tucked up watching something noisy and violent on TV since about 8pm, and I've been sewing in my study right next door. I've just made us some tea from the upstairs kettle and as it's 11pm I think I'll take my tea off to bed and catch up with the daily papers on my tablet. Boo has been tucked up in his sleeping bag for ages.

Take care everybody.
Love, Mo

Marmalade
Posts: 18
Joined: Thu Jul 06, 2017 3:29 pm

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Fri Sep 08, 2017 7:38 am

Hi Mo,

I'm going off line for a week but wanted to drop you a line to say well done for getting in some swimming and adopting a more relaxed attitude to Peters diet. I know it's really hard to let them push a plate away. I'm glad you and Peter are managing this new phase although none of us underestimate the continuing anxiety. I often think about the knowing, not knowing thing and whether a big event out of the blue would be better than this. I don't know the answer.

Weight, OMG, this is not in the explanatory pamphlets but very many of us balloon! I was fairly ok until Louis died then it was the biscuit diet for 4 months and its a lot more than 1.5 stones! I am hoping there is enough left after the purchase of the new house for a deposit on the extreme liposuction (it may take more than one go!). I only have fat clothes so at least I don't have that worry haha.

What to do with the food... In the end I just made whatever Louis fancied, or his favourites, mashed up in some cases. Lots of chicken, sole Bonne femme, plain grilled sole, potatoes mashed with cream (yuk!) and latterly little pots of Philadelphia cheese and so on. More and more food got wasted but never mind, it's unimportant in the scheme of things.

You are a trooper Mo and I am sure that little of the anxiety and dread that you feel is on here but we all know it is mentally and physically exhausting this is. You are doing such a fantastic job and Peter has come this far as well as he has been because of you, remember that.

I hope you, Peter and Boris have a good week.

Marmalade xx

Justamo
Posts: 364
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Sat Sep 16, 2017 11:20 am

We've seen the Radiotherapy Consultant. I think she must have gone to the same medical school as our Good Fairy Anaesthetist. Supremely confident, uses straightforward English (despite being German), and one had the feeling that she was completely in command of the whole situation, the staff, the department, all the bleeping machines, the entire hospital, and very possibly the whole Health Board. She radiated confidence and good humour, so I've called her Getrost. Google it if you want to know why. GetRost, not GetLost.

She's also very good looking, which is possibly why Peter paid her his full attention. She has decided on a short course of radiotherapy over 10 days, to commence on 2nd October. The aim is to halt further growth in the tumour and to return to the status quo of 'manageable with care' which is exactly what I had hoped for. The recent increase in pain is upsetting for both Peter and me, but Getrost believes that zapping the tumour will improve matters on the pain front. I asked for CA19.9 numbers, and they have gone up to 545. First lot were 135, second lot (after chemo) were 36, and now a fairly rapid increase to 545.

I'm a little bit anti-radiotherapy because of my own experience, but even I know that its accuracy has improved a zillion times since I had it and got left with crumbly bones. She went over the side effects very carefully, which Peter has stored away in his Ostrich File (Let's pretend this isn't happening), and then we went over to the Radiotherapy Suite for some planning. My legs started shaking as we went through the door, but the whole place has changed, extra bits added, and a positive maze of corridors snaking off in all directions. So my legs stopped shaking, and I hung on to bag and jackets and coats and watches and chains while my guy went off to get scanned and measured and have his torso embellished with tattooed dots. I got through two OKs (mostly bathrooms and frocks and cleavages) and a Chat (the THINGS people do and what they do them with) and then Peter came back oozing blood from his tattoos but being a brave soldier.

And then we were asked who our McMillan nurse was. Well, we don't have one. So we have been given one, and he phoned us yesterday afternoon. He briskly ran through Peter's symptoms, suggested something for the current nausea, and made a date for coffee next week. I'm beginning to feel the need of a little help myself, I'm tired of saying "Fine thanks" the next time somebody asks earnestly "And how are you COPING dear", and am tempted to say "Oh, I'm great. Having a ball. My husband is dying in front of me but everything's just hunkydory". I would have been in total meltdown by now if it hadn't been for the forum.

I'm aware that so far we've had a good-ish year apart from a run-in with Mr Bogeyman, but the Good Fairy Anaesthetist, Dr Feelgood and now Getrost have all made up for him. God knows if any treatment will help, but we both feel that Peter is getting the best possible treatment.

He's in bed now, but is planning golf tomorrow. I would rather that he had one really enjoyable day and then spent a few days recovering, rather than spend his time carefully and slowly like an invalid. Getrost said exactly the same thing. "It's about enjoying yourself". And she didn't say "While you still can". For which I am thankful.

His 10 days of treatment will be completed before I am due to travel to London for my late cousin's memorial service. Not sure if I will be able to attend it, I'll wait and see if my boys are well enough to leave. Boris is well and happy and is enjoying creeping through the jungle of nasturtiums that have sprawled over the whole garden. His large white stern becomes visible from time to time so at least I can see where he is. But they're easy to pull up (the nasturtiums, not Boris), and at least stop some of the weeds. Some frantic lawn mowing on the one dry day so far this month has helped tidy things up a bit but soon it will be time to put the garden to bed for the winter. Once the Autumn Crocus start flopping about it's time to empty the hanging baskets and scrub the tubs.

Sorry for the length of this post. You've probably nodded off by now . . . .

Love, Mo

Veema
Posts: 354
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thanks for sharing your experiences . . .

Postby Veema » Sat Sep 16, 2017 9:00 pm

I hope the radiology helps Mo, its something our hospital don't offer, but I know several do...I struggle to understand these differences of opinion.

You're coping as well as can be expected...we all know how tough it is, but you get up each morning and bumble along through the day...its all you can do.

Huge hugs...and loads of positive vibes for Peter.

Vx

Marmalade
Posts: 18
Joined: Thu Jul 06, 2017 3:29 pm

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Sat Sep 16, 2017 9:20 pm

Darling Mo,

There are no rights and wrongs only your story. Of course you need a bit of help for goodness sake, it doesn't matter that Peter has been comparatively well this last year living with this diagnosis is a form of torture! There are times when knowledge is unbearable.

I am so glad that Peter's team are still very much supporting him and offering ideas for his comfort and that you now have a Macmillan Nurse who might give you a bit of support too. Don't forget your GP, he/she is there to care for you as well as Peter and your should not feel bad about asking for a bit of help if you need it. We have all felt that we should be able to cope as we are the wives and carers but the fact is we have all had family of friends close by, we don't do it alone. You have been amazing so far and with a bit of support and pain control you will both go on making the very best of things.

Big hugs, M xxxx

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Sun Sep 17, 2017 2:22 pm

I just want to say, you are one very exceptional lady Mo and this forum would be a poorer place without you.

My love to all 3 of you. I won't ask after the slugs. xx

Justamo
Posts: 364
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Wed Sep 20, 2017 7:28 pm

Yesterday we had TWO excitements. We've got a McMillan nurse. His name is Donald for the time being, but I am hoping to rename him Superman before very long. He is lovely, and exactly the sort of person you need to have around you if one of you has cancer. And Boris likes him, too. Boris is quite particular about who he meets, he's not a tarty sort of cat at all, but he sidled up to Donald and checked him out and it appears that they like each other. So that's alright then - we need to get our priorities sorted out here.

We told him all about the meeting we'd had with Getrost (keep UP at the back - Getrost is the radiotherapy consultant) and he endorsed everything she had said about enjoying the day if it was a good one, and taking it easy if it wasn't. We spent ages chatting to him but although it was clear that Peter liked and trusted him he began to glaze over after an hour or so (Peter, not Donald or Boris) and I think he was tired of cancer talk. So they talked about golf instead for a little while. And the relief of being able to talk honestly about this Thing made me well up a bit. I am not the sort who can wipe a discreet tear from my eye with a snowy handkerchief - my nose goes red and runs and my mouth quivers and I dribble so I pulled myself together enough to ask if he could sort out some counselling for me, and he's going to see to it.

And then we had to see the GP. By way of acknowledging my teary state, Peter suggested that we leave the smoked haddock swimming around in the bottom of the fridge and have a McDonalds instead, so we did. He managed 3 Chicken Selects and 14 chips, and I had a Happy Meal and got a Roald Dahl Sticker Book. I've managed to lose 4 lbs so far and I wasn't going to spoil it with a Super Dooper Large Whopper Burger With Cheese and Extra Fries.

The GP and Peter chatted about golf for 20 minutes or so (we were the last patients), and I chatted to the Chinese medical student about Xian and Beijing which I visited about 10 years before she was born, and then we all pulled ourselves together and got some prescriptions. The Longtec has been doubled with the proviso that we can even triple it at night if we wish, and the Metaclopramide has been continued. GP finished with a short lecture on The Undesirability of Constipation And The Avoidance Thereof, and clutching scrips we drove home.

Today Peter seized a moderately good day firmly by the scruff of the neck and took himself off for some golf coaching, and I got an aquarobics class, which was nice. And I gave somebody a tote bag that I had made to be used as a raffle prize and picked up orders for several more in the ladies' changing room. And I've got more designs in my head, so we'll womble along with one of us seizing days and then resting, and the other one doing everything else and sewing, and the third one purring. I even made time to go to my nice hairdresser and get several inches chopped off my hair which makes life so much easier when I've been swimming and drive home with a towel wrapped round my head.

And the smoked haddock has been gently poached in milk and served to My Patient who ate most of it. And Boris got the bits left over. They're both asleep now, one purring and the other snoring. It is pouring with rain and it's nice being tucked up in my study tapping away, even if I did have to climb over a mountain of fabrics and sketches and stuff to get to my desk.

It's comforting having a McMillan Nurse. It's even more comforting having his mobile number together with the knowledge that I can phone when I want to. And it's such a relief that Peter has now accepted the reality of this situation and we don't have to dance around the subject.

Tomorrow I have an MRI scan and I expect that Peter will spend the morning in bed. So I'll go and play parking wars at the hospital and he'll watch Jeremy Kyle and then we'll see how the day pans out.

Hope it's good for you, too.
Love, Mo

sandraW
Posts: 990
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thanks for sharing your experiences . . .

Postby sandraW » Thu Sep 21, 2017 8:14 am

Hi Mo, I did reply the last time you posted, but on looking at your thread its disappeared somewhere, it was just to say I hope you got a good Macmillan nurse and you obviously have. It does make a massive difference just knowing there is someone there to ring should you need it, I never needed to ring ours but knew she was there if I needed her.
Hope the results of the scan are as good as they can be for you and that you all, Boris included can make the very best of all those good days. love sandrax xx

stepuha
Posts: 91
Joined: Thu Nov 10, 2016 2:31 pm

Re: Thanks for sharing your experiences . . .

Postby stepuha » Thu Sep 21, 2017 1:06 pm

Dear Mo,
Your Macmillan nurse sounds lovely. We don't have such support here and every time I call the emergency number I feel like I have to go through the whole story and they still can't give me any answers. They just send me straight to the nearest emergency. Luckily we have not had to use their services recently.
I have had my issues with pain management as well recently. On some days it is quite difficult to manage. I was prescribed morphine on Tuesday but I stopped taking it after two attempts. It just makes me so sick, I don't stop vomiting. The doctor says I should take Metoclopramide for nausea from morphine and laxatives on a daily basis for constipation caused by Morphine. So you take on pill and then have to take several others to counter the effects of the first one. Luckily the pain has reduced since so paracetamol is helping most of the time for now.
It is good to hear that your hospital has a plan of action. I really hope that radiation helps with pain. If not, perhaps celiac plexus block can be considered. I asked for it to be done but was told that they would only consider if pain couldn't be managed by other means.
I hope you had good news on your MRI.
With love,
stepuha

Justamo
Posts: 364
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Thu Sep 21, 2017 9:54 pm

Stephua, you and Peter have identical problems - apart from the PC, that is. Morphine makes him terribly sick, so his GP has given him oxycodone hydrochloride, both slow release and fast acting. It doesn't affect him as much as morphine does and he says the fast acting (Shortec) ones work within 20 minutes or so. He also takes Metoclopramide for hiccups, nausea and to help the digestive process. He is now taking 20mg of the slow release (Longtec) at 0930 and 2130, and we've been told we can put the evening dose up to 30mg if he wakes up early in the morning with pain. I didn't have any problems with morphine and took it for 7 or 8 years, but I'm glad not to take it now. I was grateful for it at the time, and it certainly killed the pain, but it muffled everything and it was like moving through a thick fog.

We've only had a couple of days of the increased dose so far; he's still saying he feels sick and this afternoon he claimed to be feeling dizzy as well. When we checked his blood sugar it was 2.8 so it's amazing that he was even vertical. Some sugar lumps followed by bread and butter brought things back to normal.

Incidentally, Peter calls Longtec and Shortec "Hi-Tech" and "Low-Tech" respectively. But I know what he means. He is currently in a temper because he has wiped all his e-mails by stabbing away randomly at his tablet and the screen has gone blank. This is the first time he's looked at his e-mails since last Christmas so heaven only knows why he picked tonight.

The MRI scan was a nightmare and I think I'm going to need counselling. I've had loads of them before, but this time they played our local radio station at me while I was being scanned. I only listen to Radio 4 and Classic FM and I had to listen to 45 minutes of pop music and adverts and a half-witted DJ. At one point they asked if I was OK and I asked them to turn off the radio - the sound of the scanner (road drills) was preferable.

Peter is in bed watching cowboys on the TV. Boris is trotting backwards and forwards anxiously in case I forget to give him his bedtime Dreamies. I've been working all evening and could do with a large drink, but I'll settle for a cup of tea instead because I'll be driving early in the morning.

So goodnight all, God Bless and take care.
Love Mo

Justamo
Posts: 364
Joined: Sun Sep 04, 2016 9:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Wed Sep 27, 2017 7:42 pm

Nearly a week since I last posted. I expect you've been glad of a break. We've spent most of the time trying to make Peter more comfortable. He's up and about most of the time, and going up to the golf club when he feels like it, but the pain is increasing and the hiccups are dire.

He finds that sitting bolt upright helps with the pain, but he falls asleep within three minutes of sitting in his armchair, so that's not much use. He is finally taking his pain relief as the medical profession intended and not randomly - "It's Thursday, so I'll have a Longtec" - and finds that it works quite well although his blood sugar is all over the place. It's frustrating to have to deal with hypos just when he's comfy, and he really doesn't want to eat very much so filling him up with sugary drinks spoils his already diminished appetite. Reducing the insulin a little yesterday resulted in blood sugar of 17. I would prefer to keep his blood sugar a tad on the high side because I think that's safer than letting him go off to sleep at night when it's only 4.8.

Yesterday he had to attend the eye clinic (he has macular degeneration) and fortunately didn't have to have one of their horrible injections in his eye, so we got out early and by way of celebration went round the shops. He got some new trousers and a cheap fleecy jacket to wear around the house, but within an hour or so he was exhausted so we headed for home. Fortunately activity doesn't seem to make the pain worse, and it's good for him to get out when he can. He's not a homebird.

This morning he had a golf lesson and after lunch insisted on cutting the small front lawn. I thought it was better to let him get on with it, so I got the mower out for him and left him to it while I caught up with some weeding. It took him over an hour, and he had to have two rests and a tea break. But he felt pleased with himself, and it was an almost 'normal' day. For Planet PC, that is.

Funny how your world diminishes at a time like this. My world revolves around pain relief, blood sugar, appetising small meals, and hospital appointments. There are occasional short breaks for swimming, aquarobics and essential shopping, but it's OK. I'm coping. More or less. I'm very conscious of not smothering him with nursing and turning into a Care Bear. That wouldn't suit him one little bit. And I've an appointment to see somebody at the Hospice next month to learn about any support that might be available for me.

I haven't had any news about my MRI scan yet, but that's alright, I'm not too bothered. Oh, and I've had orders for about 20 tote bags, so I can take my mind of stuff by sewing manically into the night while My Patient watches something unsuitable and noisy on his TV.

Today's high spot: Peter has discovered that drinking very cold water makes the hiccups vanish. For at least an hour.

Today's low spot: Boris is trotting backwards and forwards to the study looking mournful because I'm not in bed with him. He thinks that when it gets dark we should all be in bed. Together.

For new readers: Boris is not my toy boy. He's my cat.

Take care
Love, Mo

sandraW
Posts: 990
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thanks for sharing your experiences . . .

Postby sandraW » Wed Sep 27, 2017 8:57 pm

Mo, You are a tonic, you really are, that's it now its "Boris" in a very sexy accent the toy boy!!!
Glad the cold water helps with hiccups, lets hope it continues to give relief.
Its so true your world does just as you say diminish, its all about doing what we can to help them feel as good as they can, and do what they can. The grass cutting scenario fetches back the memories of Trevor just the same wanting to carry on and do the things he had always done, getting there but doing 10 minutes work and 20 minute rests in between. But getting the satisfaction that he had done it even if like you I had got the mower out and put it back.
My youngest son his wife and 2 grandchildren, 9 years and 15 months have moved in with me about 4 weeks ago now, and I am gradually getting back on track, they are sorting out the garden which was an absolute mess and made me very ashamed, as Trevor would have been mortified. But I just didn't seem to have the get go, I did so well the first year after loosing him, but everything fell apart the 2nd year.
I agree with Boris (the TB) these dark nights, it should just be straight to bed, nicest place to be. take care Mo and I hope Peter continues to get relief with his medications, love sandrax xx